Tested "positive" For Celiac Disease

[iheartcats]

My Tissue Transglutaminase AB came back 'high' so there's a strong probability I have Celiac Disease. I have to start a 3-month trial of no Gluten and go from there.

This is what I read about the test that confirmed it:

"The best initial laboratory test for diagnosis of celiac disease is anti-tissue transglutaminase antibody (anti-tTG), IgA. If this test is positive, it is likely that the patient has celiac disease."

I'm frustrated. I'm thankful my Rheumatologist thought to test for this and I know...I'm upset, though, because it's something else to deal with, to make me abnormal and makes going out to eat almost impossible. I eat a lot of bread, pasta, items with wheat and am a good baker. I love cake, pies, cookies. This is really unfair.

Since Celiac Disease is an 'autoimmune disorder' technically, it can't be taken lightly. COULD it be affecting my body and making my POTS worse? I would like to know. I would like one good to come out of this (I start feeling better).

I'm on the verge of tears because it's going to mean making 'two dinners' now for the family and I only have so much energy. I can't ask my spouse to give up the foods he likes. I can't tell people not to have holiday meals with all the breads. The family is very carb-heavy! I don't eat meat, but am now eating chicken/turkey as I have to eat something!

I'll be starting this diet later this week once I get some more information on what to eat, cook, etc. I feel bad eating gluten now, but need a few days to adjust. I can't do it cold turkey. I figure by next week (November 9th) I'll be gluten-free to the best of my ability.

Please share any help/advice/and thanks for letting me vent.

[avidita]

I am sorry you are feeling anxious about your new diagnosis. I've read some on the connection between POTS and Celiac Disease and from what I understand it can actually cause POTS symptoms. In other words, if you take care of the Celiac Disease through diet modification, etc. it may improve your POTS symptoms significantly. Which would be something to look forward to. I hope that is the case with you!

[Sophia3]

It can add to POTS if you have digestive issues that keep you wiped out (no pun intended)

I have tried eating this way a couple of times even though my blood work came back normal.

First, remember you can eat many normal candys...join a GLUTEN FREE message board and mall site. They are MOST helpful.

For pasta, there are many brands...and many are gross or smell weird but "ok". My favorite was Tinkyada brand. http://tinkyada.com/ My room mate ate this with no complaints. Breads are another story and I am sure those who eat GF will help you with that.

Though expensive and they go stale quickly, there are some decent baking mixes or already made cookies (Pamela's Chocolate Chip and her dark colored Ginger cookies I loved)

Concentrate on some sort of potatoes or rice for your bread replacements.

My biggest hint is to BE on this diet at least a couple of weeks before baking. The products are different! And it's a chore to learn the special routine. you can make your own things from scratch but you need good GF flour mixes (Potato starch, rice flour, etc) If you have an oriental store near you SHOP THERE FIRST for GLUTEN FREE flour needs. They are much cheaper. Stay away from the bean flours! Even if you can eat beans as they can cause severe bloat/distress! There are good cookbooks but you can find many recipes online!

The xantham gum NEEDED to make baked goods work is EXPENSIVE but shop around. Also it caused mild diarrhea in me even though it's not supposed to so just be aware. If you make baked goods, double wrap and put in fridge to keep safe or freeze. GF stuff seems to dry out QUICKLY..even if you open a box of pre made baked goods (can you tell I am a fan of sweets, too! )

Now read up, do your homework and just try not to panic. I understand the stress of cooking two meals but just make stuff you can eat and if folks want bread to BUY their choice. If they can't adapt to the Tinky pasta, have a discussion on that then.

Now I must tell you I made the following GF choc cake and it's VERY GOOD. My tip, I added 1 tsp of dry decaff instant coffee (you can find the single packets in some dollar stores) I pulverize it into a power or it will stay gritty. Keep in air tight tin in Fridge and put wax paper against the edges after you cut a piece. This helps a bit to keep from drying out further. Also frost cakes when a bit warm.

http://www.recipezaar.com/One-Bowl-Gluten-...ate-Cake-209764

Now take a deep breath, educate yourself, and realize many live this way.

Your main trick if you eat out a lot is finding a place you TRUST to be Gluten free.

Good luck.

p.s. I tried this for joint pain and fatigue issues and it never helped.

[Tachy Phlegming]

Vietnamese food is pretty good. They use rice noodles (in many thicknesses) which I usually prefer to rice.

And there's Mexican. Corn tortillas aren't bad.

Some of the substitutes however, are awful. There's quinoa pasta (yuck).

I hope I never have to get a test for celiac (famous last words). I actually prefer the above listed (positive) suggestions to wheat but eat wheat a few times a week or even once a day depending on what other food problems I have/develop and how creative I am.

[MightyMouse]

try looking up my old posts on this--some may come up in the chit chat section. Best bread I've ever found is from Ritts bakery in Phila. They'll ship to you. pizza blanks, cookies, and cakes from him are AMAZING and worth EVERY penny (I have no affiliation w/ them, other than as a customer).

Nina

[Mrs. Burschman]

Cat Lady,

I'm sorry. I would be upset, too. I really love baked goods. But if it makes you feel better, it's probably worth it.

Doesn't make it any easier, though.

Amy

[juliegee]

Vietnamese food is pretty good. They use rice noodles (in many thicknesses) which I usually prefer to rice.

And there's Mexican. Corn tortillas aren't bad.

Some of the substitutes however, are awful. There's quinoa pasta (yuck).

I hope I never have to get a test for celiac (famous last words). I actually prefer the above listed (positive) suggestions to wheat but eat wheat a few times a week or even once a day depending on what other food problems I have/develop and how creative I am.

QUINOA ROCKS!!!!

[juliegee]

I am sorry you are feeling anxious about your new diagnosis. I've read some on the connection between POTS and Celiac Disease and from what I understand it can actually cause POTS symptoms. In other words, if you take care of the Celiac Disease through diet modification, etc. it may improve your POTS symptoms significantly. Which would be something to look forward to. I hope that is the case with you!

Ditto!!! This could explain so many of your "allergy" symptoms. I bet once you start eating correctly, your autonomic problems calm down. this could be a wonderful thing!

[iheartcats]

Everyone thank you so very much. I'm starting to feel better 'planning' my diet. Tomorrow I'll research recipes (thanks for your tips above so very much) and start to get an action plan.

Once I told myself I deserve a week to research, find recipes, see exactly what I have to do, etc. I calmed down. For some reason I thought at first I'd have to just jump in and go gluten-free but it's much easier with my weaning off plan.

Sophia - I'm sorry trying it didn't help you, but appreciate you were able to share so much information with me.

Mack's Mom - I didn't think about my allergy issues...I'll have to see if those get better!

I was told it'll be a good three months to see if I'm improving without gluten. I'm really concerned about cross-contamination as I'll still be around gluten. But, I guess it's a learning curve. I'll get there. At least bread comes packaged and can live in its own cupboard! And a little less pasta for the family can't be a bad thing (simple carbs and all).

I just wish I knew it'd help POTS! I guess no matter it has to help something if it's true how Celiac Disease can really mess with your body.

Thanks again for cheering me. I guess I wasn't' in the mood for another diagnosis this week. LOL (Who ever is?)

[Sophia3]

Oh and if you like peanut butter cookies here is one. NO FLOUR

1 cup sugar

1 cup peanut butter

1 egg

I read up on this recipe lately and decided to try it with one addition. 1/2 tsp baking soda. I read these made the cookies lighter and I did not want mine to turn out like hockey pucks. Smooth with forks and sprinkle with sugar. bake at 350.

To be honest I am not a huge PB cookie fan but these were great. I did not miss the flour. I would've like to have added chocolate chips but had none in the house. If on gluten free diet I would make these and make a semi sweet chocolate frosting.

WHY am I putting this hear? It's GLUTEN FREE, quick and easy and ORTHOSTATIC FRIENDLY or sit on a bar stool or chair.

If you KNOW there CAN be easy options to baked goods, it can make things less scary.

To be honest, I did not mess bread that much except for---Pizza! My sister was gonna make the pizza crust recipe (after I made a simple easy one that was like nasty biscuit dough texture--fine for biscuits!) but I stopped eating this way...the Pizza crust calls for like 14 ingredients and seemed labor intensive. Check with GF bakeries in ur area. Shipping can be outrageous these days but for a good pizza, just treating yourself a few times a year to know you can "still eat it" is psychologically helpful.

Tachy's suggestion for rice noodles is good but I don't think I ever thought to try them as I am unfamiliar with Vietnamese cooking.

Oh and I missed my stove top stuffing. Only eat it a few times a year...My sister ate this way for a long time and made great cornbread stuffing but it crumbles and doesn't have the same texture but her flavor was traditional!! She also made her own bread and it was FABULOUS!!

but other than Pizza and stuffing...GF diet isn't that bad once you've done the mindset adaptation (not for sissies but CAN BE DONE!)...especially if money isn't an issue...there is more GF available EVERYWHERE but for a premium. Betty Crocker or somebody like that even made a mix that is in the normal grocery aisle.

Good luck and keep us posted. I have lost my old bookmarks to the Gluten Free boards I went to but the people at many were fabulous..and many on budgets with kids that eat like this and give tips.

Oh and due to the neurological component of how our gut handles food, this can help your ANS to eat this way. but I never had the typical Celiac symptoms and was trying this for joint pain and fatigue. Best of luck to you.

[Maxine]

I'm sorry that you have to deal with celiac on top of your POTS, but on a good note, maybe this will help with your symptoms once you change your diet. I totally understand why your bummed, as I love carbs too, and this is the majority of my diet. I'm not a big meat eater either.

MY IGA is also high, but it's been blown off like a lot of other abnormal tests-----despite multiple diverticuli---(so many that it covers 3/4 of colon), and a 5cm diverticulum im upper small intestine.

When I did the prep for a lower GI, I couldn't understand why I actually felt better. Probably because I couldn't eat carbs for two days. I'm in denial, and don't want to face this possibility. I can't imagine life without grain. On the other hand I think I can still eat chocolate--- .

Take care of yourself.

BIG HUG

Maxine :0)

[Sophia3]

Just a note...Gluten free foods have PLENTY of carbs...just not WHEAT FLOUR based, but their foods are not low carb.

Just different type.

[Tachy Phlegming]

I do like actual quinoa, just the grain.

They mix the quinoa with corn for the pasta and I think it's a bad substitute for the real thing. But maybe it's an acquired taste.

Does anyone know anything about amaranth? I think I tried it once but don't know where to get it or how you can use it.

http://en.wikipedia.org/wiki/Amaranth

And I guess they told you or you've read you're also supposed to avoid oats, rye, barley, and beer.

You'll either feel better on the diet -- or -- you will be thrilled to go back to gluten after the diet. So one way or another, you can look forward to happier times after a months-long miserable period.

[ramakentesh]

Celiac disease can result in a feeling of 'presyncope' and symptoms similar to POTS.

[Dizzysillyak]

Hi Catlady,

Sorry to hear you have celiac disease but based on my experience you should feel a lot better once you get the gluten and probably other food intolerances out of your diet. Celiacs are known for being unable to digest dairy or other foods. They're also known for having problems with anemia, both B12 and iron, blood glucose regulation (hypoglycmia and diabetes) and thryoid problems ... hopefully, you'll doc will have all your nutrient levels tested too.

Here's my story ... I hope it's ok to post this here ... you'll notice that I have a note in the first post referring readers to the bottom of page 2. Here you'll find an up to date recap of what worked or didnt' work for me and could save you some time both from reading the whole thread and in your healing time ... and money on all those GF baking essentials. Problems with all grains, esp sweets, are very common .. And give you hope ...

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=220

Glutenfreeandbeyond is a great GF site too for recipes, etc ... The journey section will show you just how many people have found relief from their symptoms by taking control of their health, some just by eliminating gluten and others by other means, too.

I'm still dealing with OI after 4 years on this diet, but I also have a left bundle branch block and a problem getting nutrients from my food still. I'm hoping in time these problems will heal too ... I just started being able to take supplements a few months ago and from what I've seen some are helping me already. FWIW ... I know now that it definitely takes time to heal our bodies from at least 15 years of repeatedly damaging it ...

I hope this doesn't overwhelm you. I know I would've been thrown for a loop if someone had told me everything I've ended up trying over the last 4 years. Just take you time and do what's right for you.. hth ... best wishes ... Marcia

[sue1234]

Hi, Catlady, I get my bloodwork done for celiac this week. I am still going gluten-free no matter what! So, I guess we can compare notes on how it affects our POTS issues. I ordered some gluten-free stuff off of Amazon yesterday, as I can't walk in a store and my husband would never know what to shop for. I can handle the meat, veggies and fruits, rice, but I wanted some pre-made snacks and stuff to have on hand.

[kayjay]

Cat lady- I read a book about gluten free this summer ( I don't have celiac but I'll read anything). I don't remember the name of the book but it was by Elizabeth Hasselbeck ( I don't know how to spell her name).

It was pretty comprehensive in terms of explaining the disease and it had a lot of practical information. I thought that it was an interesting book. I might be a good resource for you because what you have to do can completely affect your entire lifestyle.

Specific products are recommended in the book and there are list of things to avoid. I think that there are recipies but I am not sure- I read it in the pool area when my children were swimming so it did not get my full attention- but I learned a lot from it.

I know you must feel bummed out but I am hopeful that you are getting closer to being healthy!!!! Karry

[prettyinpink]

I love my gluten free gourmet cooks fast and healthy book. it has recipes for delicious pancakes and other things that my whole family eats and loves. she also has a flour "recipe" i use this mixture of different flours and use it to replace flour in any cookie recipe with the addition of xanthum gum the cookies come out delicious and my non gluten free family all eat them. its cheaper to make your own bread, baked goods then buy from a store and they almost always come out better. bread is the hardest to make so i wouldn't worry about that for a while. I mean just don't eat sandwich bread until u figure out if you really have to go gluten free. the gluten free pantry has great mixes.

[prettyinpink]

betty crocker know makes gluten free mixes available in most stores and many varieties of Chex cereal are gluten free(they'll say so on the package). popcorn, fritos, nut thins crackers, tortilla chips are all good snacks that are in almost all grocery stores. beaver creek soup mixes are yummy and most are gluten free.

[iheartcats]

Yeah! I'm feeling better - and I've researched on the Gluten-Free board about my favorite Starbucks drink. It's OK. Somehow, that's a major relief.

Since I need to wean off this week, I'm trying to have a couple of my 'favorite' things (my last Lasagna!) LOL. But, if it's what I have to do to be successful, it's what I have to do!

I'm checking out all your resources!

sue1234 - I'll be 'gluten-free' starting next week so I'll have to keep weekly notes about any improvement. I'm sure I'll make a mistake or two (I keep reading on the boards that this happens, the first few months are hard, and don't beat yourself up).

Marcia - Fabulous resources. Thank you so very, very much. It sounds like you are improving, so that's wonderful. Even if it is slowly, it's going the RIGHT way! My doctor said it could be a year before I see major improvement.

I'll keep you updated on any POTS improvement I get...at the least I hope it helps get rid of the awful aches/pains I get randomly. It'll make it worth it!

[prettyinpink]

tinkyada sells lasagna noodles at my meijers and honestly no one can even tell a difference. for most things other then sandwich bread/doughnuts/cinnamon rolls you'll find really good replacement and many that most non-gluten free people will eat and not even notice a difference.

[iheartcats]

For some reason I'm not having the easiest time finding Gluten-Free produts here...and they are costly to ship. So I'll have to go to Whole Foods (although it's not my favorite place, alas, no choice).

But...I'll try to find this thread to post an update after a few weeks Gluten-Free. I'm just wondering how much cross-contamination I'll run into the first couple of months as I hear it's hard to completely avoid and takes patience and time.

[MelissaCrystal]

I know that this may be horrible news to you, but I'm actually very glad that you were able to get somewhere diagnostically... if your Celiac Disease can be controlled, then maybe your POTS will go into remission. I think this is huge for you, and I really wish you luck. SO many people have Celiac Disease, so you're not alone, and a lot of these people are able to function very well. Have hope. The lifestyle/diet change is really really tough and annoying, but when you feel better I bet it will make the extra effort SO much worth it---especially if you feel better and no longer think of your routine/lifestyle as difficult!

[Mrs. Burschman]

I know of one woman in particular who was sick as a dog until she finally was diagnosed with celiac. Went on the diet, and feels great now. So celiac stinks. But the possibility of a "cure" or at least vast improvement is wonderful!

Amy

[delphicdragon]

If you were just tested with one blood test, I would go through the trouble of having the blood work done again before you get the biopsy. I tested positive on the first round of blood work (on a single test out of four, but it was still considered positive), but negative on the next set, so I don't have to go through biopsy. I was told one of the tests was notorious for false positives.

I technically don't have celiac. But, I know that I can't tolerate barley/malt, so I probably have some aspect of celiac. I also don't absorb Vitamin D or B12 (or probably a host of other ones) so who knows. Not going to go through the hassle to find out. I need the comfort of carbs/sugar right now due to stress, so I'm not going to try anything right now to see if less gluten makes me feel better.

Sara